Okay, sorry for the complete lack of posting that has been going on for the past two weeks. We are still here and alive. School is keeping me quite busy and the boys are doing a wonderful job of tying up the rest of my time. So, here is an abbreviated list of what has been going on since my last post on 1-19.
Carson-
~ He was taken off of the Adderall due to the psychosis and then had to be put on to Focalin XR due to a complete inability to function. The Focalin XR did a great job of keeping him focused during the day but had a pesky little side effect of causing Carson to wake up at 2am and not go back to bed AT ALL and take no naps the whole day. After 5 straight days of our house being torn limb from limb and the whole family (well, minus Al) getting no sleep, we took Carson off of the Focalin. We started a new med called Tenex which is not a stimulant, it is actually a blood pressure med that they use for ADHD children. It has a side effect of sleepiness in the initial few weeks which we have definitely been noticing (i.e. Carson is taking a nap everyday AND going to bed at 8pm every night w/o fighting us!!) but it also has the benefits that is won't stunt his growth or kill his appetite like the stimulant meds. His teacher sent home a note today saying that "there has not been so much impulsive hitting this week and is it good to see him working cooperatively with other children!". That was a great note to get!
~ Carson had a sleep study last Tuesday at Children's Hospital that was interesting. They glued electrodes all over his head and face, he had sensors on his arms, legs, and body, there were bands around his chest and abdomen, a carbon dioxide monitor that looked just like a nasal cannula with tusks, and a pulse-ox among other things. Then the electrodes had wires attached to them and he was attached to a unit on the wall! I don't know how the child slept but he did. We don't have the results back yet but the nurse told me that he snored, had some apnea, teeth grinding, and sleep talking through the night. We should have the official report from the ENT's office today or tomorrow.
~ The visit to the hematologist on Friday went well. The ENT sent us there to ensure that Carson does not have Von Willebrand's Disease even though they did a complete work-up for it in December through his ped's office. I guess since he was on a bunch of steroids at the time of the December blood draw, it could have falsely elevated his blood levels so they needed to re-do all 9 vials of blood. The T&A surgery and possible reconstructive throat surgery Carson is having is quite bloody and if he did have Von Willebrand's Disease, he would have to have a drug called DDAVP prior to the surgery so he wouldn't bleed out. Well, the hematologist called yesterday and his preliminary blood results look GREAT! They are almost 100% positive that he does not have Von Willebrand's Disease like his daddy and Granny Bass!! YAY!
Now on to Eli....
~ Massive amounts of wheezes seem to have taken up residence in Eli's lungs. We are on Flovent BID as usual and Albuterol q4hrs. They almost wouldn't give him his Synagis injections last week b/c it is contraindicated in children with a pronounced wheeze. Thankfully we convinced them that Eli is just too respiratory compromised to take the risk of not getting his Synagis and that since he is already wheezing, if he got RSV on top of that, it would be a bad hospitalization for sure. They agreed but made us stay over 30 minutes post-shot to ensure his wheezing didn't get worse.
~ Eli is a crabby baby lately. He is finally getting some teeth (right now he is 19.5 months and only has 6 teeth). His top two molars are trying to break their way through and the tiny white points have managed to pop through the gums. He is a miserable teether and is constantly chewing on his hands and fussing. We noticed two days ago that there are two white bumps beside each of his bottom teeth so hopefully he will have a grand total of 4 bottom teeth in the next few weeks.
~ Eli is growing!! We are still on the Peptamen Jr. elemental formula (Tiff, I know you asked). It is 60% MCT oil and broken down for Eli's compromised GI system. He seems to still get a slight bumpy, red rash when he gets normal milk instead of his Peptamen Jr. We are doing a great job of weaning down on tube feeds and only need his feeding tube a few nights a week. He still needs vented through his MIC-key several times a day and his teething seems to have aggravated some retching and hiccup routines dealing with his Nissen fundo unfortunately. Hopefully that will pass.
~ Speech is coming along fabulously. New words are popping out of his mouth everyday. He loves saying Carson's name and Carson gets a kick out of it too. Last night he wanted a bite of my cookie and I said, "What do you say?" and he said, "I say peeaaasss." It was so cute. I'm loving this. I'm sure when his speech therapist comes in a few weeks that he will be discharged! Hooray for one less appointment!
~ I'm keeping an eye on a weird foot turning in thing (is that technical enough for you??). Eli is turning in his left foot funny when he is sitting or laying, not walking, all of a sudden. It looks a bit like a CP thing to me and so I will mention it to our PT and OT when they come. I'm hoping it is just a habitual thing but he doesn't seem to realize it's happening.
Now that I've written my SHORT update, I'm going to follow this post with a picture post since I know you have missed seeing Carson and Eli's cheery faces!
Wednesday, January 31, 2007
Playing together?
I was able to catch an unusual (but more frequent) moment in our household this week. Carson invited Eli to play with him. It was brief but such a joy to witness that my mommy senses kicked into overdrive and the camera just jumped into my hands. Enjoy the moments....I know I did!
Friday, January 19, 2007
Grow baby, Grow!
Eli went to the pediatrician today for a follow-up appointment for his asthma and ear infections. Unfortunately he still has wheezing in his lungs even with the Flovent added in two times a day. They want us to reintroduce Albuterol q6hr this weekend to see if we can open his lungs up and keep him from escalating into a full blown asthmatic crisis. It doesn't help that he has BPD on top of his asthma either.
Now on to some good news, no new ear infections to report today! Eli still had some residual fluid left in both ears from his double ear infection last month but no new inflammation or fluid build up. Hooray for the absence of ear infections for once!
Just when I thought we were going to escape the doctor without a script for an antibiotic, his ped saw his g-tube site. I wanted him to take a look at it anyway b/c it had been looking icky (great medical term, huh?!) and Bactroban wasn't clearing it up. Well, Eli has another g-tube infection and he earned himself a script for Omnicef. Hopefully his site will look better by his surgeon appointment next Thursday.
The best news of the day came at the beginning of the appointment though. We have been waiting and waiting and waiting for our little man to finally grow length wise and it looks like he did it!! After making such huge strides in his weight gain over the past 6 months, Eli has gained some ground in the length race too. After an official weight of 24 pounds even (again), Eli measured a whopping 33.25" long. YAY! For his adjusted age of 15.5 months Eli is in the 90th% for length and 40th% for weight. For his actual age of 19 months he is in the 60th% for length and the 20th% for weight!! YAY Eli (yes, I know I'm abusing the exclamation points in this paragraph but I can't help it!)!!! His weight-for-length percentage has climbed from being so far below the charts that they were going to admit him 6 months ago for FTT, to being in the 17th% today :)
Our little man is growing up (both figuratively and literally), talking, running, climbing, and teasing his brother to death. Our house is so much fun right now.
Now on to some good news, no new ear infections to report today! Eli still had some residual fluid left in both ears from his double ear infection last month but no new inflammation or fluid build up. Hooray for the absence of ear infections for once!
Just when I thought we were going to escape the doctor without a script for an antibiotic, his ped saw his g-tube site. I wanted him to take a look at it anyway b/c it had been looking icky (great medical term, huh?!) and Bactroban wasn't clearing it up. Well, Eli has another g-tube infection and he earned himself a script for Omnicef. Hopefully his site will look better by his surgeon appointment next Thursday.
The best news of the day came at the beginning of the appointment though. We have been waiting and waiting and waiting for our little man to finally grow length wise and it looks like he did it!! After making such huge strides in his weight gain over the past 6 months, Eli has gained some ground in the length race too. After an official weight of 24 pounds even (again), Eli measured a whopping 33.25" long. YAY! For his adjusted age of 15.5 months Eli is in the 90th% for length and 40th% for weight. For his actual age of 19 months he is in the 60th% for length and the 20th% for weight!! YAY Eli (yes, I know I'm abusing the exclamation points in this paragraph but I can't help it!)!!! His weight-for-length percentage has climbed from being so far below the charts that they were going to admit him 6 months ago for FTT, to being in the 17th% today :)
Our little man is growing up (both figuratively and literally), talking, running, climbing, and teasing his brother to death. Our house is so much fun right now.
Tuesday, January 16, 2007
Saturday, January 13, 2007
Doctors appointments and meds, OH MY!
Sorry for the long silence in between posts. Winter quarter started back in full force for me on the second and I feel like I haven't stopped since. I'm going to focus this post on Carson since most of the past two weeks have been spent hopping back and forth to various doctors offices, pharmacies, and radiology departments for a very active 3.5 year old.
ADHD- Okay, on the ADHD front, we have been suspecting that Carson has been having hallucinations or psychosis as a side effect from his Adderall for a few months. The side effects started getting worse and Carson was seeing bloody ghosts, bunnies attacking him, clapping gloves under his bed, etc, etc. His appetite dropped off almost completely. He lost 2 pounds. It was time to figure out something else for his ADHD. Our pediatrician consulted with one of the pediatric psychiatrists at Children's Hospital who agreed that Carson needed taken off the Adderall immediately and needs a consult/evaluation due to the complexity of ADHD and Sensory Processing Disorder. So, we take Carson off of the Adderall (10mg of Adderall XR in the mornings and 5mg of normal Adderall in the afternoons) this past Tuesday. He also started on Prozac to help with his extreme anxiety involved with going to bed and sudden abandonment issues. The first two days without the Adderall were a bit more active than normal but tolerable none the less. Then came Thursday and Friday.....better known as the days from HELL. Carson was uncontrollably impulsive, violent, hyperactive, and miserable. He could not stop moving. He spun for over an hour followed by 90 minutes of running from our front door to our back door. I needed a few beers. Carson was a serious danger to Eli and was adding new bruises to himself with his overactive and unsafe behavior. We gave him half a dose of Adderall this morning and he was at least tolerable and not unable to function today. He goes to the Behavior Clinic at Children's Hospital on 2-12 for a medication adjustment and further screening.
SPD- Carson's oral sensory input needs are increasing ten-fold. The child is chewing on everything and anything he can find. He wants us to buy him a chewie because he has one at school. His spinning has increased and his sensitivity to tags and clothing is getting worse. The good news comes from the bathtub. He is loving bathtime now and no longer screams in terror when you tell him that he is dirty and needs cleaning. We are looking into bumping his OT up more times a week.
Medical- We went to the ENT the first week of January and Carson is getting his tonsils and adenoids out. He is also getting tubes in his ears due to having 4 severe ear infections in the past 3 months including 1 perforation and 1 near perforation. This has caused some mild hearing loss for Carson and needs to be treated as soon as possible. The ENT was also quite concerned at the number of times Carson gets croup or croup like symptoms/cough. At 3.5 years old, croup should be a rare occurrence, maybe once a winter. Carson had croup from September until the end of November and three times since then. This led the ENT to order an airway fluoroscopy test to look for subglottic stenosis. Carson had the test on Tuesday morning. They didn't find subglottic stenosis but instead an "irregularity of the trachea". This could be one of many things. A cyst on his trachea, a papiloma, a hemangioma, or scar tissue caused by being intubated at birth. Carson now has to have a laryngoscopy and bronchoscopy to see exactly what this irregularity is. If it is a cyst or a papiloma, his throat surgeon will just cut it out during the bronch. If it is a hemangioma, they will leave it alone unless it is obstructing too much of his airway b/c of Carson's risk of Von Willebrand's Disease. If it is scar tissue, they will evaluate the severity and then schedule surgery based on the results. It can be a simple as a few laser cuts along the scar tissue to as serious (and terrifying) as a full tracheal reconstruction and a tracheotomy for at least a month! Carson will have a sleep study at Children's Hospital prior to his tonsil and adenoid surgery/tubes to make sure his sleep apnea is only caused by their enlargement. The bronch will most likely be before his T&A and tube surgery since his airway takes priority. All this is scary but we want our baby fixed! The great news is that Carson's asthma is finally under control with the use of Flovent twice a day, Singulair at night, and Albuterol as his rescue medication. YAY for asthma control and no more wheezing!!
School- Carson continues to adore preschool. His teachers Ms. Linn and Mrs. Lippert are amazing and continue to stimulate his environment in just the right ways. Every morning Carson wakes up and runs into our room excited to get dressed for school. He plays hide and seek with me while we're waiting on the bus in the morning and is all smiles when we pick him up at the bus stop at lunch. We are incredibly lucky to have a program like this special needs preschool in our school district. Carson has learned so much intellectually and socially. He is a different kid than 6 months ago and is constantly astounding us with his abilities and sense of humor. The tough days are tough but he is a great kid with a personality that shines.
I'll end with a quote from today in the car. Carson was just chattering in the backseat as he always does when all of a sudden this comment popped out....
"Mommy, I won't be able to add anymore if they take my adenoids out. That makes me sad."
Ahhhh.....he kills me every time!
ADHD- Okay, on the ADHD front, we have been suspecting that Carson has been having hallucinations or psychosis as a side effect from his Adderall for a few months. The side effects started getting worse and Carson was seeing bloody ghosts, bunnies attacking him, clapping gloves under his bed, etc, etc. His appetite dropped off almost completely. He lost 2 pounds. It was time to figure out something else for his ADHD. Our pediatrician consulted with one of the pediatric psychiatrists at Children's Hospital who agreed that Carson needed taken off the Adderall immediately and needs a consult/evaluation due to the complexity of ADHD and Sensory Processing Disorder. So, we take Carson off of the Adderall (10mg of Adderall XR in the mornings and 5mg of normal Adderall in the afternoons) this past Tuesday. He also started on Prozac to help with his extreme anxiety involved with going to bed and sudden abandonment issues. The first two days without the Adderall were a bit more active than normal but tolerable none the less. Then came Thursday and Friday.....better known as the days from HELL. Carson was uncontrollably impulsive, violent, hyperactive, and miserable. He could not stop moving. He spun for over an hour followed by 90 minutes of running from our front door to our back door. I needed a few beers. Carson was a serious danger to Eli and was adding new bruises to himself with his overactive and unsafe behavior. We gave him half a dose of Adderall this morning and he was at least tolerable and not unable to function today. He goes to the Behavior Clinic at Children's Hospital on 2-12 for a medication adjustment and further screening.
SPD- Carson's oral sensory input needs are increasing ten-fold. The child is chewing on everything and anything he can find. He wants us to buy him a chewie because he has one at school. His spinning has increased and his sensitivity to tags and clothing is getting worse. The good news comes from the bathtub. He is loving bathtime now and no longer screams in terror when you tell him that he is dirty and needs cleaning. We are looking into bumping his OT up more times a week.
Medical- We went to the ENT the first week of January and Carson is getting his tonsils and adenoids out. He is also getting tubes in his ears due to having 4 severe ear infections in the past 3 months including 1 perforation and 1 near perforation. This has caused some mild hearing loss for Carson and needs to be treated as soon as possible. The ENT was also quite concerned at the number of times Carson gets croup or croup like symptoms/cough. At 3.5 years old, croup should be a rare occurrence, maybe once a winter. Carson had croup from September until the end of November and three times since then. This led the ENT to order an airway fluoroscopy test to look for subglottic stenosis. Carson had the test on Tuesday morning. They didn't find subglottic stenosis but instead an "irregularity of the trachea". This could be one of many things. A cyst on his trachea, a papiloma, a hemangioma, or scar tissue caused by being intubated at birth. Carson now has to have a laryngoscopy and bronchoscopy to see exactly what this irregularity is. If it is a cyst or a papiloma, his throat surgeon will just cut it out during the bronch. If it is a hemangioma, they will leave it alone unless it is obstructing too much of his airway b/c of Carson's risk of Von Willebrand's Disease. If it is scar tissue, they will evaluate the severity and then schedule surgery based on the results. It can be a simple as a few laser cuts along the scar tissue to as serious (and terrifying) as a full tracheal reconstruction and a tracheotomy for at least a month! Carson will have a sleep study at Children's Hospital prior to his tonsil and adenoid surgery/tubes to make sure his sleep apnea is only caused by their enlargement. The bronch will most likely be before his T&A and tube surgery since his airway takes priority. All this is scary but we want our baby fixed! The great news is that Carson's asthma is finally under control with the use of Flovent twice a day, Singulair at night, and Albuterol as his rescue medication. YAY for asthma control and no more wheezing!!
School- Carson continues to adore preschool. His teachers Ms. Linn and Mrs. Lippert are amazing and continue to stimulate his environment in just the right ways. Every morning Carson wakes up and runs into our room excited to get dressed for school. He plays hide and seek with me while we're waiting on the bus in the morning and is all smiles when we pick him up at the bus stop at lunch. We are incredibly lucky to have a program like this special needs preschool in our school district. Carson has learned so much intellectually and socially. He is a different kid than 6 months ago and is constantly astounding us with his abilities and sense of humor. The tough days are tough but he is a great kid with a personality that shines.
I'll end with a quote from today in the car. Carson was just chattering in the backseat as he always does when all of a sudden this comment popped out....
"Mommy, I won't be able to add anymore if they take my adenoids out. That makes me sad."
Ahhhh.....he kills me every time!
Tuesday, January 02, 2007
Christmas pics long overdue!
I realized that I never shared many of our wonderful Christmas pictures with everyone here in Blog Land this year. This post is simply a conglomeration of the joy we had with our boys and our family (click to enlarge them)....enjoy!
Subscribe to:
Posts (Atom)